Equipment Needs for Neusa & Her Family


It is so easy to take movement for granted, but Neusa and her family can no longer do so. In fact, even the smallest shift from bed to chair takes multiple people, a lot of energy and special equipment.  Below is just a sample of some of the equipment and services that Neusa and her family will need just to be able to live at home and perform daily tasks.

While insurance may pay for a portion of each of these items, the bulk of the fees are the patient's responsibility.  We hope to ease the family's burden by raising enough money to purchase this equipment or identifying generous donors who are compelled to sponsor a specific need.  If you like to do this, please click the donate link or fill out the contact form on this site to connect with a family member. 

 

Wheelchair Accessible Home: At some point in life, everyone just wants to come home--to feel the safety and security of home.  Yet, at the most challenging and scariest time in her life, Neusa can't  come home; her home is not accessible to her.  As a result, Neusa and her family must pack up and find a new place to live--one that can accommodate her needs.  To build or modify a livable home for Neusa and her family is the Number One priority, and it will require significant financial support to do so.  

 

Possible Surgery: As medical research advances, we are always optimistic that these advancements will lead to better movement and self-sufficiency for Neusa. Currently we are learning about nerve transfer surgery.  We are hoping that this may become a viable option for Neusa in the future. There is no indication whether or not this procedures, or others, would be covered (in part or entirely) by insurance.

In-Home Health Aide: While insurance will provide a certain number of hours per week for an in-home aide, the family anticipates more will be needed.  Without around-the-clock care much of the housework and the responsibility of caring for Neusa will be more than the family can handle.  Therefore, we would like to raise additional funds to cover the cost of additional hours for in-home care. 

Physical Therapy/Massage Therapy: Neusa's needs go beyond the regular physical therapy that she has a Gaylord twice per week.  She needs daily physical activities to promote movements in her body.  Unfortunately, insurance will only cover physical therapy twice a week and no massage therapy.  These  consistent and regularly scheduled wellness services are critical to maintain healthy muscle tissue and minimize muscle atrophy. 

 

Occupational Therapy: Currently Neusa's visits to Gaylord twice per week are shared between physical and occupational therapy.  This is not enough time and practice for Neusa to become more self sufficient.  Occupational therapy teaches Neusa daily tasks such as feeding herself and brushing her teeth as well as basic skills such as grasping and lifting objects.

Portable Wheelchair: Neusa has limited arm and hand movement. She also experiences dizziness. A power wheelchair tilts, feet can be raised and, most important, has lateral supports to keep Neusa from falling to the sides. Insurance has paid for a larger chair, but Neusa needs a smaller, more portable one to be able to travel outside of the house.

Electric Patient Lift/Hoyer lift and pads: This machine is necessary for us get Neusa from the bed to the wheelchair, or shower chair. This machines allows for a smooth transfer for Neusa, and maintains back safety for caretakers since the machine does all the weight lifting. 

Insurance will only pay a fraction of this item, even though it is critical to be able to move Neusa from one place to another.

 

Shower Chair: Currently, the safest way for Neusa to take a shower is with a shower chair that either has tilting feature, or where the back piece and feet are adjustable. This is important so that she won’t slide down the chair.

Chair with tilt function can cost up to $2,000, and it is unclear if insurance will pay any portion of its cost. 

 

Hospital Bed: The biggest benefit of using a hospital bed is being able to adjust the height of the bed and adjusting the head and feet. This is important to prevent back injury in the caretaker and it helps to reposition Neusa since she is not able to sit up without assistance.

Insurance will only pay a percentage of its cost

 

 Air Mattress: Air mattresses protect the skin from pressure ulcers. Since Neusa cannot turn herself as frequently as we do, she is at high risk for these ulcers.

 

 Automatic Bicycle: Wheelchair accessible bicycle that paddles automatically. This machine can help with circulation, maintain muscle mass, increasing heart rate, etc.

It is not anticipated that insurance will cover this.

Standing Frame: This equipment is used by people who are not able to stand, such as quadriplegics. Benefits are: maintenance of bone density, better bowel and bladder function, good for circulation, good for skin by relieving pressure, good for range of motion, good for expanding the chest and lungs while breathing.

It is not anticipated that insurance will cover this.

Alexa & Compatible Wall Plugs: The Echo devices will help increase Neusa’s independence. Compatible wall plugs will allow Neusa to control lighting in different rooms by voice through Alexa.

Assistive Technology Laptop with hands free software subscription

With the limited use of her hands and arms, Neusa would greatly benefit from technology that can be controlled through head movements. Fortunately, the technology does exist with the appropriate hardware and assistive technology software.  Neusa needs to purchase the laptop as well as have the funds for a monthly subscription for the application.  We envision this to be a lifelong cost. 

Orthotics & Gloves (both hands): Orthotics prevent deformity of limbs and also help with everyday tasks by stabilizing the joints. Neusa has around 4 different orthotics that she uses. Some are used for feeding, others for using the stylus pen, others for feeling, and one overnight for preventing deformity and muscle contractures. 

Insurance has covered a few of them, but multiple ones are needed.

 

Catheterization Kits & Daily Disposable Supplies: Because of her injury, Neusa cannot feel when her bladder is full. Therefore, 4-5 times a day, someone will empty her bladder using a tube which we call “straight cath.” A new, sterile tube is used each time this is done.

This is just one example of the daily needs and the residual costs the family will incur throughout Neusa's lifetime. There are many other disposable daily supplies she will require that insurance will not fully cover.